If I’m Being Honest: Looking at the Lows of Living with a Chronic Illness

You may or may not have noticed my absence in recent weeks. I wish I could say that I was too busy vacationing in the Caribbean to write. Or maybe that I’ve been traveling through Europe or pretty much anything else than the state that I’ve been in for pretty much over a month now. So, if I’m being honest, what has been going on?

Real life isn’t always picture perfect

In my 2+ years of writing my blog, more than anything, I’ve always done my best to maintain complete honesty and transparency in all of my posts. I’ve always put myself “out there” and never pretended to be something that I am not or make a situation appear to be anything other than what it is. I know many bloggers who only put the picture perfect parts of their life out there. Making the rest of us who live in the real world of markers on our walls, laundry piled up, and the occasional odd smell in our homes feel like we are somehow doing something wrong.

Why is so important to be honest?

I write with honesty so that those who are walking the same path as me can feel less alone. So maybe someone can learn a thing or two from my mistakes, or be inspired to live their best life. Honesty is important because it allows people to feel less isolated and helps to keep (myself included) from trying to live up to impossible standards. With that in mind, I feel it is important to maintain these ideals as I attempt to write a little about what I’ve been up to in recent weeks.

Life can be a long, hard road sometimes

Being honest, as much as I try to focus on the positive and see good in all things, it has been a rather difficult road in recent weeks. My PsA and RA continue to rage, unchecked by medication and lifestyle changes. Increasing fatigue, pain, and anxiety have been my constant companions. The days have been long, filled with sleepless nights and fighting flares. Focusing on prayer and being the best possible wife and mother have been some of the only things that have made each day worth living. Those things have kept me grounded and give me reasons, everyday, to keep pushing on. But even with that, with all the blessings in the world, living with a chronic illness can be very difficult.

Moving forward with no end in sight

During these particularly difficult times, I try and focus on the fact that this is not a permanent state. That these weeks, these days, these hours are temporary. And while I feel that there isn’t an end in sight, I know that it is somewhere, sometime, hanging out there in the distance. Somewhere beyond what I can see today, there are answers.

In many ways, I have been lucky. I have found strategies and products to help manage the pain and live with the anxiety. Yes, I have come up with a combination of products and routines that have made living with this easier, but it takes constant effort and constant vigilance. It is a never-ending game of trial and error, and sometimes it can all be just too much. Assessing my symptoms and evaluating the many factors that make up a “good” day vs a “bad” day takes its toll on me both mentally and physically. That constant effort can feel like such a heavy burden sometimes.

There is no forgetting

Some people say, “Forget about it for a while.” And while I understand that way of thinking, if I’m honest, I have to say that people just don’t understand how hard that is. It’s not like “forgetting” about the piles of laundry at home or letting go off a stressful week with a few drinks on a Friday night. Chronic illness just doesn’t work that way. The minute you let go and “forget about it” then it rears its ugly head and the next thing you know, you are bed bound for days recovering from the simple fact that you thought you would be “normal” for once.

Living with a chronic illness is hard

In recent weeks, I have been so overwhelmed with simply managing my days that honestly, I have been completely unable to write. I have been unable to sort through my feelings enough to really make any sense of what has been going on in my head. You see, chronic illness can play tricks on you. It can feel like it is coming at you from all sides, taking over nearly every part of every day. So much so that it becomes difficult to think straight. When you add in the brain fog (part of most chronic illnesses) and side effects from some medications, it is very easy to lose track of what really matters and that is simply living.

Knowing that I will never technically “get better” I cling to the hope of “feeling better.” It is a fine line to walk between chronic illness management and chronic illness hopelessness.  While there is healing in acceptance of the fact that I can’t simply take medicine and get better, as if I had an infection. There is still always a hope that I will find my way, through supplements, diets, or other products, back to my “old” self. But if not, that’s okay too. For today, I am who I am- old, new, sick, well- it doesn’t matter.

(Sing it with me…) Let it go….Let it go….Can’t hold it back anymore…

For today, I don’t need to apologize to those I love if I’m not feeling well. I don’t need to carry guilt for cancelling plans with friends or for leaving some dirty dishes in the sink. Life is hard enough trying to manage to simply live happily with a chronic illness, without adding so many extra burdens on top of it. Just let some of it go.

I’ll speak more about this in coming weeks (I hope). But for now I want you to know, if you feel alone. You aren’t. If you feel overwhelmed, angry, or afraid. That’s okay. If you struggle with anxiety, depression, or simply feeling down, speak with your family or a trusted friend. Ask for help and don’t give up. Hold on to hope and it will get better.